@hollylb10

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hollylb10

Ocrevus - what to take with me!

So I am hoping to be approved for ocrevus and was told it takes quite a long time to have the infusion, could take all day. So of course my mind is over thinking and I wondered if there is anything I should take/want when I’m there? Will I want to eat, or will I not have an appetite? I can imagine that I am likely to get most side effects whilst having the infusion as I am sensitive to everything med wise even paracetamol make me feel sickly! Will I want to read my book, or am I likely to be really sleepy? I am such an over thinker, sorry for the silly post!

watsoncraig

@watsoncraig

Hi. I was advised to take a packed lunch and a water bottle along with a book to keep myself occupied. First half dose tomorrow morning

hollylb10

@hollylb10

Ok great thank you! I hope it goes well for you! Let me know 😊

lukezni

@lukezni

@hollylb10 hello, the hospital provides lunch but as we know hospital food isn't the most appetising haha. I brought some snacks with me, music, and a book but didn't really use them as I was with others receiving the same treatment so we just chatted with each other. You get really sleepy when they give you your antihistamines, the tiredness lasted around an hour for me. It may seem like a long day but it goes by pretty quickly. Best of luck I hope it goes well for you

watsoncraig

@watsoncraig

They fed me! The Broth was superb

Stumbler

@Stumbler

Good luck, @hollylb10

hollylb10

@hollylb10

Thank you everyone! Still waiting for confirmation that I can have it!! I am going to take my husband with me, I think he will be bored to death by the sounds of it 😂

HeatherCorina

@HeatherCorina

They were right when they told you to drink a lot beforehand because it'll make things easier for both you and them when putting your iv in. It's only twice a year so I don't remember how long it took. But for most part my husband and I have taken a laptop computer and a bunch of DVDs to watch till it was done. But I do know it was faster than than some other infusions.

Lisa_Morghan

@Lisa_Morghan

Hi I'm Lisa you sound in fear of not really really knowing what to do it's not " chemo" your most likely feel fine...... always bring water pack lunch or at least a apple power bar !!! Best to you stay strong keep on keeping on 👍👀🔮

Lisa_Morghan

@Lisa_Morghan

Your not being over thinker your just not sure soooooooo here we are..... I'm choosing to know you'll do just GREAT be at peace breath relax you got this !!! 🤟⚘🧤

Rheddmomma42

@Rheddmomma42

Hello I'm new here and I saw the post about doing the ocurvus infusion I too am doing it. I already had my starter dosages the first one took 4.5 almost 6 hours but the second half took 3. My advice is to take some food and water and just relax for the procedure BTW the press meds will make you tired

Mlgilber1

@Mlgilber1

I always take hard candy or lollipops because I usually get a nasty taste in my mouth from the premeds. I’m in the US and my infusion center only provides snacks so I bring something to eat since my infusions usually last 9 hours due to reactions. Good luck!

Kyle_Grigg

@Kyle_Grigg

Good luck be sure to take ocrevus selfie and honestly a book it helps pass the time

DominicS

@DominicS

I'm not being snide. It really isn't that big a deal. A book, some tunes. A snack or two unless you actually like hospital food! The first time is c. 5h. I cycled back to the train station after my 2st infusion as I felt entirely normal. Don't sweat it. It'll be good.

Suse

@Suse

I attend a private clinic in Ontario Canada for my infusions. I take plenty of snacks and a book. I find the infusion makes me quite tired so feel free to rest. The clinic I visit has a tv, lots of pillows and blankets to keep you comfortable which is truly outstanding. They often play movies and are always there to help. Best of luck.

ItsMewithMS

@ItsMewithMS

Not silly at all...you are sitting there for a long time! I brought my husband ;-) supposed to bring someone with you to drive you home as you get a benedryl type med to manage allergic type of reactions. I did with the first half infusion which slows things down a bit. For me it manifested in a rash on my cheek and a red ear lobe. I brought a hand mirror with for the second infusion so I could just keep an eye on myself...first trip I just used my phone/camera. I asked them for a little tray thingy that they typically have for bedsides to put my computer on and they insisted that I would feel too drowsy and people usually just read a little and sleep...not me ;-) I did have my laptop with me and worked more on my daughter's digital scrapbook. I had them put the infusion line in my left arm as I am right handed and just mustered on and did some scrapbooking ;-0 I didn't notice any strange tastes or anything from the Ocrevus itself it is the saline stuff they flush the line with always gives me a yucky metallic taste in my mouth. The staff had offered me juice and water...I like apple juice and that took the taste from my mouth so was good. I also packed some snacks (nuts and fruit)

KerryDawn

@KerryDawn

I usually take a packed lunch. And I take my tablet to keep myself occupied to read my book or listen to music or meditation. I have had 3 full infusions so far and sometimes I end up falling asleep at one point during it. I get there at 9 am and done by 2 pm or so.

Cooper

@Cooper

I agree in taking a packed lunch. Historically I have had no side effects but my first full infusion is tuesday. Yes you get tired, but it's nothing really to worry about. Can you believe I'm even having a date in the hospital 🤣. She is coming too and insisted on coming, which is really sweet. I have got some games and might watch some netflix too. Good luck, it's a time where the only thing you can so is chill, when in life does that happen with absolutely nothing else to do? Enjoy the time

Cooper

@Cooper

I agree in taking a packed lunch. Historically I have had no side effects but my first full infusion is tuesday. Yes you get tired, but it's nothing really to worry about. Can you believe I'm even having a date in the hospital 🤣. She is coming too and insisted on coming, which is really sweet. I have got some games and might watch some netflix too, I was taken aback really. A really shitty year with my split and the divorce going on, nearly losing my job and of cause diagnosed with MS. It can only get better😁 Good luck, it's a time where the only thing you can so is chill, when in life does that happen with absolutely nothing else to do? Enjoy the time

hollylb10

@hollylb10

Well thank you guys, it’s so nice to hear from others who are on the same journey as me! I have been approved so that is good, just got to wait until April for a pre assessment now....seems like forever, especially when I feel all funny like my hear is going to roll off of something...very fuzzy! The cancer link concerns me some what, I don’t know if I should be doing some more research! How lovey @cooper to be having a date, that’s a keeper!